Blogging

I first started my blog as a way to help me sort through my feeling and help put in to perspective what was going on in my life after Baby was born. I wanted to get our story out there, to maybe help other new mums and families that would probably be going through or feeling the same things I did after birth.

See when she was born my hubby and I got the biggest surprise ever. Our prefect little bundle has Down’s syndrome (DS). Nothing had been picked up on any of the scans. I had declined the blood tests to see what my risks where of having a child with DS, due to the fact I had one during a previous pregnancy 2 years before that said my risks were low because of my age and if I’m completely honest I never dreamed I would have a child with a disability.

As with all births, afterwards emotions are always at an all time high and for my family that was no different. Add to that try to take in all this new information about your baby and not being able to hold them. I was a wreck! Both psychically and mentally. I tried to hold it all together best I could but spent most of my time in tears or holding them back until I was alone. I did try to talk to family and friends but most of the time they would ask me if I had postnatal depression. It was like a slap in the face to me at the time. I knew I wasn’t depressed I just wanted my baby. The baby I had dreamed about throughout my pregnancy, the baby I wanted to hold in my arms and wanted to for fill all the hopes and dreams I had for her.
I now know I was grieving for the child I thought I was going to have and that it doesn’t mean I loved Baby any less and all I wanted was someone to pull out their crystals ball and tell me how her life panned out but they couldn’t. For me though the hardest part of all was leaving her in hospital for the first few weeks. Every day that I had to leave her at the hospital was torture for me but I told myself it was the best place for her. It was great when I finally got to bring her home. But the feelings and emotions were still there waiting to be worked through. So I started blogging.

As a teenager I had always written in a diary that I filled with my crazy, hormone fuelled ideas about life (it was mainly filled with thoughts of boys or why my parents were so uncool!)and throughout upper school (high school) when I was bullied. I would scribble, doodle and write down poems. Writing was always the way I had worked out my feelings. Putting it down and out of my head just made everything clearer.

When it came to my first few blog posts, I poured my heart into all of them. Then I became stumped and had nothing really to write about.

Or so I thought!

I found writing about what me an my kids get up to and joining up to Linkys helped. But I always find myself worrying is this what people want to read?

I now know I need to forget what everyone else wants to read. This is my blog this is my place to do and say what I feel and want. I just need to be me and true to myself, put all my thoughts and feeling in order the way I want.

I do hope that one day, reading my blog and what I went through in the beginning. Will help another mother, parent or family push through any problem or unexpected surprises or finding out their child has Downs syndrome too.
Help them know it’s ok to cry and that it doesn’t mean the end of the world (Like I first thought). It is actually something really great.

My little girl is amazing and I think how thankful I am everyday that she pulled through and fought. I treasure every amazing thing she does. Probably more then I ever did with my other children (because she has to work that bit harder and I honestly took what they could do for granted). Baby has showed me the error of my parenting and made me realise there is so much more. That is why I am thankful I was given the gift of a child with Down’s syndrome. She taught me how to love whole heartedly and more then I ever believed possible. I am also glad I started blogging/writing for helping me realise this and put it out into the world.

Nikki ❤

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The Reading Residence

Weaning Ivy the fun and games.

Warning contains pooh talk

Even though I have weaned my 3 older kids with Ivy from the start I was nervous about the change and how it would affect her. I had read many parents on facebook Down syndrome support sites asking about what to do because their kids didn’t eat well due to their tongues sticking out or getting in the way. The other main problem I had read about was constipation.

I was reluctant to start weaning because I was honestly scared incase problems started to arise. We had been so lucky so far Ivy had no major health problems (apart from her brief stay in neonatal at the start). Her heart had been scanned and all the holes had closed on there own, her lungs had cleared and her breathing was good, her weight gain was good and she was poohing on a regular basis. She was a happy thriving baby.

I knew that while she was breastfeeding that constipation wouldn’t be a problem due to breast milk having a laxative affect on babies.

Eventually she turned 6 months old and I could put it off no longer I had to put my worries to one side and start weaning her!

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The face says it all!

We started off with the usual baby rice and then moved on the yogurts. We also tried baby porridge. I came up against the usual problems with the tongue but found long, thin ended spoons helped get around that one.

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And then it was trying to get fluids in to her other then breastmilk. Every time I gave her fluids out of a sippy cup she would spit it out all down herself or her bib.

After the first week of 1 meal a day I thought we had managed to get through without any problem but then what I feared most and had worried about started to happen.

constipation!

She started not going. Some days it would be every 2 days others she would go 5 days and I started to stress! She wasn’t in pain, at first. But I knew the signs because of the rabbit like pellets in her nappies when she finally did go or the redness an pushing she had to do to get the tiny pellets out.

I had a choice to make.

– Did I go to the doctors and see if they could prescribe something to help her go.

Or

– Do I try some natural methods and old wives tails etc.

I decided to go the au natural route first because I wanted to know we tried every option and we would find one that worked best with Ivy. I was also worried that if I started her on medical laxatives so young that she may be on them for life.

So I reach out to the amazing group on Facebook which is full of other parents with children that have Down syndrome and that have gone through the same problems I was going through. I was given loads of helpful hints and tips such as:

– blended prunes in yogurt or cooled boiled water.

– mixing pure orange juice with cooled boiled water.

– cooled boiled water.

– just breastfeed more often.

– massage the belly in circular motion and peddle the legs slowly.

– lots of fresh vegetables and fruit.

I decided it would be best to try removing all stuff like porridge and rice until we had this problem under control.

I will say it all worked and over last few weeks I have managed to have her eating 2 meals a day (breakfast and tea) and going rather regularly (every 2-3 days). I mainly started out giving her just blended fruit or mixing in boiled water if I believe it was too thick for her. Now she is having vegetables on a tea time followed by yogurts or yogurt and blended prunes (which she loves) and has fruit for breakfast.

I have missed a her tea once when she hadn’t gone in 3days and i just breast fed her more often. The next morning she had a lovely surprise in her nappy for me.

I have never been so happy to see pooh or as excited when she goes 2 days in a row!

I was starting to wonder was I normal but today I was talking to a fellow DS mummy and she explained to me she use to be the same with her daughter and it filled me with hope that I wasn’t becoming obsessed.

I still know we have a way to go and I am hoping to have her on 3 meals a day really soon but for now this is working and I want it to stay that way.

We still have to work on the sippy cup problem but one thing at a time and I know now that if things get worse I can always go to the doctors and have medicine prescribe and be happy in the knowledge I tried everything I could first.

nikki ❤

6 months today!

6 months ago today she entered our lives and gave us a massive shock.

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It’s hard to believe how quickly time has flown by.

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In the early days all I really remember is my fear. I was scared for her future and about not being sure what it would hold or if she would every be able to do things like an average child. I remember asking the nurses and doctors in neonatal and being told “she should be able to”. That wasn’t good enough for me though because I wanted to be told it

would all be ok!

The first few weeks were a blur and all I wanted was for everything to be ok and for me not to just see Ivy as Down syndrome. It wasn’t that I didn’t love her cause I did, but every time I looked at her at first it’s all I could see. She was beautiful and amazing but all my early memories are blurred with my fear, worry and now regret because at first I wasn’t able to let it go and enjoy my amazing baby.

Slowly as timed passed Ivy started to show me why she was more and why I should love her for everything she had achieved.

Her first smile

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Holding her head

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And of course being beautiful

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I wonder to myself why I was ever scared or what about the situation caused my fear because my child is more then just Down syndrome she is

IVY

and she is going to take on the world and show it what she is made of!

In the last 6 months my life has brought me more joy then I can ever imagine (and quite a few grey hairs too) but I wouldn’t change a single second of it, because without those tears or that fear I would have never of been able to push through and realise that my family are great and I would have continued to take it all for granted an never realise how amazing they all are.

Now the fun begins though because the next 6 months contain all our birthdays (3 of which are in September)

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The prep and planing begins 🙂

Nikki ❤

Why me? Why not?

When I first found out my daughter had Down syndrome. I can honestly say that on more then one occasion I thought to myself, why me? Why was I being punished? What had I done to deserve this?

I know that I haven’t actually done anything and that her having Down syndrome was done on a genetic level before conception. It was either the chromosomes not dividing properly in mine or my husbands sex cells. Which means that either my egg had an extra copy of the 21 chromosome or it was the chromosomes in my husbands little swimmers. There is no way to tell which one of us it was either and there nothing we could have done to stop it and it wasn’t caused by anything I did during pregnancy.

Before having Baby I always believed that DS was something that happen to some women who had babies when they were 35+ years old. I now know that it is a common misconception and actually over 50% of babies with born DS are born to women under 35. This is due to higher fertility rate the younger you are.

I will always remember when I was at my first booking in appointment when I was pregnant with Baby and the midwife asking me about the blood test to see what my risks were for having a child with DS and me telling her I didn’t need it as I had had the test done in a pervious pregnancy and got the low for my age being 1 in 1,250. Nothing was ever picked up in any of Baby’s scans, not even her 3D scan I had done. So she shocked us all at birth.

I know now that those negative thought were just my way of processing the shock, coping with the fear and grieving for the child I thought I was going to have. Most of the other DS mum’s I have talked to have told me they thought the same in the beginning. I found talking to other mums that had or were going though stuff similar to me a great help and I enjoyed reaching out and reading about all the beautiful children.
The Facebook group future of down’s was a great help too.

Slowly over time I realised that I didn’t think “why me?” anymore but instead I thought “why not?”.

Why not me?

I stopped thinking like I was being punished for something I had done in a past life. She wasn’t a punishment but a gift that I should treasure and look after.
I still think to this day what I did to deserve her but it not in a negative way anymore but instead a positive.

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I want to know what I did to deserve such an amazing baby? She is one of the easiest (baring the 3 weeks in neonatal, where she gave me enough stress to last a life time) I have ever had. She sleeps through night, barely cries and has a smile that brightens up my whole day.

Why shouldn’t I have the chance to experience complete unconditional love. To have a child that makes me stop an realise how the smallest an simplest things to some are actually a major triumph to others! Things I had taken for granted with my other children when they were young I now saw it there true light and for the amazing things they were.

Having a child with Down syndrome wasn’t a bad thing but actually an amazing thing that opened my eyes to a whole world I was missing right in front of me. It reminded me that I have to take time to notice the little things because if not I am missing out on some spectacular things.

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Nikki ❤

Redpeffer The Theme Game

The weeks that followed.

The first few days after Baby was born, while we waited for confirmation that she did have the Down syndrome. Where a blur of tears and a roller coaster of emotions.

Because she was rushed to neonatal shortly after birth I spent my days in the hospital by Baby’s side listening to the beeps of the machines an willing her to fight and get better. I would sing to her an tell her she had to fight as she had all her brothers an sisters waiting to meet her an shower her in love an kisses.
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If I wasn’t by her side I would be hidden in my room expressing what the midwife called “liquid gold”. So that once Ivy could have milk mine would be waiting for her. Luckily I had a really good supply, so much so that after a week of expressing they asked me to start home freezing because there freezer was full of my milk.

On day 2 I had to go home an leave her at hospital. It was one of the hardest things I have ever had to do. I remember the empty numb feeling I felt when I walked into my house to be greeted by all her things I had laid out before I went into hospital. Her crib an Moses basket just waiting for me to place my bundle inside. This was meant to be a happy time but instead I found myself crumpled an crying on my kitchen floor. That night I had my husband move all her stuff an cover it with a large sheet, so it was still waiting for her but it wasn’t a constant reminder.

Baby didn’t make much improvement until day 3. When her blood pressure started to regulate an slowly but surely they started removing wires. By day 5 we had our confirmation that yes Baby had trisomy 21 which meant she had a extra 21 chromosome. Where as we have 46 or 23 pairs she had 47 so she had 22 pairs and 1 triple set.

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I’m not going to lie it wasn’t what I had hoped for and I had told myself they had made a mistake but now the confirmation proved I was wrong and my fears came rushing back.

All I could think was how was I going to explain it to my kids, would people accept her and would they blame me?

Deep down I knew I loved her with all my heart and her having Down syndrome didn’t matter as long as she got better.
But my fear clouded it all my emotions because I still had to come to terms with everything.
I found myself worrying if she would sit up, crawl, walk or talk?
And all I wanted answers to expel my fears and for someone to tell me it was all going to be ok.

My husband was great an never seemed to bat an eye lid. He loved Baby without question and accepted everything really well. He was my rock and helped me to just focused on the good. He also spent most of time looking after kids and didn’t even complain that he hadn’t so much as had his first cuddle with her until she was over a week old.

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On day 5 Baby came off the ventilator and was breathing for herself. Which meant we were finally able to hold her again. She still needed support with oxygen but she was starting to make major improvements. After another week of minimal support she slowly started spending more time in just normal air and didn’t need as much support. Finally when she was 16 days old she was moved out of neonatal and was put on the ward where I could be with her full time to help get her feeding before she could come home.

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I don’t think I have ever been so excited to be having sleepless nights an dirty nappy duty.

I had been expressing like a machine to keep my milk supply up because I wanted to breastfeed. I had read that children with Down syndrome can breastfeed, but there could be issues due to her low muscle tone, such as weak suck and sleepiness but I wanted to try. In neonatal she was fed with a Nasogastric tube or an NG tube which went up her nose an down into her stomach. I tried for the first few days I was with her full time but the hospital weren’t happy as she didn’t wake for feeds during night and was having problems latching.

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After 4 days of trying to breastfeed all the stress an pressure I felt I was under ended up affecting my supply an it drop considerably even though I continued to express. So I decided I would try expressing an bottle feeding just until I got her home an then we would try in the comfort of our home.
She took to the bottle really well. She still didn’t wake for feeds but she would sleep feed and it was another step closer to getting her home.
After getting her feeding from bottles everything just seemed to slot into place. She had her NG tube removed at 22 days old an she was allowed home the next day.

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I was so overjoyed to have my baby home. To finally have my whole family back together again 🙂

The first few days home where full of feeding, expressing, nappies and sleeping when we could. Slowly but surely we all got in to a routine and life became easier and her Down syndrome became easier to accept. Once I got to spend time with her to see how amazing she is and what she was capable of I knew her fighting spirit was still going strong and when ever I have a down moment or things start to look bleak she amazes me again.

She did it on her first week home when she started to latch properly and I started having some success with breastfeeding. By 5 weeks old she was exclusively breastfeeding and gaining weight well.

I have a feeling my little girl is not finished with her surprises yet and going to be one that never gives up just like me.

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Nikki ❤

The day everything changed!

Having already had 3 beautiful children and experiencing birth 3 different ways. I thought that I was a pro and lived in my own ignorant bliss that my 4th little bundle would make an appearance and be just the same as her 2 older brothers and her sister.

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How wrong was I!

My 4th little bundle is Baby an she is the most amazing little girl ever. I will say since having her I have started finding grey hairs at the ripe old age of 26. I know she probably wasn’t the cause but I know they weren’t there before she was born.

As with all my other pregnancies she didn’t arrive by her due date no matter how much I hoped/coaxed her to get things moving.
So at 12 days over due I faced another induction of labour.
So on the morning of the 4th October 2013 I trundled into Bradford royal infirmary maternity unit and was booked in.
After been hooked up to the machines the hospital realised I was actually in slow labour (something I had known for the last few weeks) and decided to see if my body could do it on it’s own.
My labour did progress but not as fast as the hospital staff liked and my little girls heart rate kept dipping showing signs of distress. They decided to start me on a hormone drip (syntocinon) to get things moving. It was at that point I ordered my epidural! It took an hour for them to get it in the right place after 2 failed attempts but it was finally in an they told me I could lay back. As I moved my leg on to bed, I got the urge to push.
Typical!
The little madam had been causing me pain for weeks and I finally get some relief from it an she decides she wants to arrive. 10 minutes and a few pushes later, at 10.15pm (before my epidural had even kicked in) she entered the world.
That’s when all the fun and surprises started. Because she had been in distress during labour she had opened her bowels and swallowed some of the meconium. After what felt like a life time of silence, she took a few cries and calmed down.

Then they weighed her. I was expecting her to be just like my other kids which were all average to big babies going from 7lbs 10oz – 9lbs at birth. Baby came out a tiny 6lbs 10oz and I had nothing in my hospital bag that didn’t drowned her.

When she was born because of the meconium being present doctors had been called to give her checks and that when they noticed something wasn’t right but decided to leave us a while and come back once I had been sorted an had chance to cuddle my little girl.

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30 minutes later the doctor came back in and it was like the whole atmosphere in the room changed. It was at that moment I knew something was wrong before the doctor even started to explain.

They told us that they thought Baby had Down syndrome.

The news was a shock I hadn’t expected or even dreamed of and in that moment everything seemed to changed. It was like the world stopped but everything kept going.
I felt like it was my own fault in some ways for not having any tests done but in previous pregnancies I had the blood test that said I was at low risk of having a child with DS and in all honesty I didn’t think it would happen to me.
The doctor explain a blood test would confirm it and I should enjoy my baby.

I should enjoy my baby!

Those words echoed over an over in my head. While I was frozen with fear and my mind raced with questions. How could I enjoy my baby when she had Down syndrome? What was her future going to be like? Would she ever be able to experience being a mother herself or even be able to have a normal life?

I didn’t ask any of these questions to doctor I was too busy trying to process everything that had just happened. Once she had left the midwife tried getting me to nurse Baby. I had always planned to breastfeed, she said sometime children with Down syndrome can have problems feeding but Baby seemed to be doing ok once she latched on. So she left us to bond an process everything. After like 20 minutes of her trying to feed I noticed she was getting sleepy and hard to wake. I moved her so I was cradling her in my arms and that’s when everything changed!

Baby’s lips started turning blue, her skin a grey colour and her breathing went shallow. My husband ran to get a midwife and it became all systems go. My room filled with health care professional and became a blur of oxygen masks and monitors. I just stared at the door in front of me not wanting to see what was happening to my baby and feeling completely helpless as I gripped on to my husband’s hand.

That was the moment my mother instinct kicked in an that’s when Baby having Down syndrome didn’t matter as long as she lived I would love her no matter what.

She was whisked off to neonatal an was put on a ventilator due to her swallowing meconium an it causing Meconium aspiration.

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Nothing could of prepared me for what happened the day she was born and at the end of it all I was left alone in a room on the ward with everything whizzing around in my head and without my baby that my arms so desperately craved for.
From that moment I willed Baby to fight an hang in there and I made a promise to myself and to her that as long as she fought I wouldn’t give up.
It’s 5 months on and she is still going from strength to strength. We have mastered breastfeeding, smiling, hold our head up and recently rolling over.

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Proud is an understatement for how I feel about this child because she is amazing.

Nikki ❤